The Journal of Pastoral Care 43:4 (Winter 1989): 297-308.

 

LIVING AND DYING WITH AIDS

Elizabeth Goss, M.Div.
Staff Chaplain
The Methodist Hospital
6565 Fannin, Houston, TX 77030

Describes how caregivers may work with AIDS patients to assist them in their attempts to remain in control of their deaths. Reports, using actual case materials, how being authentically present in the dying and death straggles may assist AIDS patients and their extended families. Notes the importance of the caregiver coming to grips with his or her own mortality and claims that this ministry is a clear example of God's acceptance as mediated through human hands and hearts.

Pastors who minister to people living and dying with AIDS, whether as ordained clergy or lay ministers, parish clergy or hospital chaplains, face the same issues as those for whom they offer care. They arc living and dying with AIDS. It is true, of course, that any person in pastoral care who ministers with people in health crises inevitably must face with patients their ultimate questions. implicit in the human experience: Who am I? What is my purpose in life? What is the meaning of my illness? Why is God punishing me? But for people living with AIDS, the questions appear to take on a different quality, a deeper level of intensity. This is the case not so much on an individual basis—the issues an individual AIDS patient faces may not seem on the surface to differ greatly from those faced by any patient confronting a catastrophic illness. Thc difference appears when one compares populations of patients.

Cancer, for example, once regarded popularly as a "death sentence," is no longer so regarded. Many cancers are susceptible not only to remission but to "cure." The mortality rate for most pediatric leukemias is under 50 percent. Other once fatal diseases no longer lead to despair, as new treatmcnt modalities have become available. Even heart diseases, like cancers, while often terminal, are not invariably so. It is different with AIDS. The people who arc dying range from a few months old to middle age, with a steadily decreasing number of cases over 45 years of age; they are dying with life goals unreached, their dreams unfulfilled.

The people who have committed their professional and helping skills to support people living with AIDS (family members, lovers, health care professionals, clergy, lay volunteers) have grown accustomed to premature deaths, to ever-present death. Yet who among us can become "accustomed" to such data. Gay men talk quietly about the twenty to thirty people they have known who have died. Nurses and doctors in hospital AIDS units suffer the same anguish. Although many people with AIDS are living longer, they arc all dying.

What does this mean for pastoral caregivers?

First, it means taking the risk of entering the lives of people to whom death will come too soon, too early. Second, we must make a special effort to assist people with AIDS to identify the areas and life-decisions over which they still have control, and reinforce their exercise of that control. Third, we must be sensitive to the moments at which a patient not only needs to talk and fantasize about dying and death, but seeks assurance that the pastoral carer is open and ready to do so with him or her. In my experience, more often than not this means discussing funeral arrangements, suicide, and estate planning. Fourth, the pastoral care person is likely to enter into a long-term relationship not only with the patient, but with family members and lovers, often mediating between individuals and acting as an advocate with hospital staff members, social welfare agencies, and other decision-makers.

Caring when Death Comes too Soon, too Early

For most of us, whether as caregivers or as members of families or groups of friends, life consists of events colored by wide varieties of emotions—joy, sadness, hope, disappointment, anger, confusion, helplessness, strength. As a hospital chaplain, I have customarily ministered on the same nursing unit to people who are dying, and to others who are being discharged, "healed" as a result of medical intervention. Some are parents leaving the hospital rejoicing at the birth of their babies. Similarly, pastoral counselors work with some individuals whose personal or family stress is relieved by therapeutic intervention, while other clients seemingly fail to benefit from counseling. There is, I suppose, a sort of "balance," overall, so that those situations in which we are renewed support us when our hurt and suffering are unrelieved. I am not suggesting that people living with AIDS are universally in despair, that there are not moments of deep joy and celebration. But it is the ever-present shadow of death, unrelieved as yet by hope of a "cure" for AIDS, of which the caring person must always be cognizant. If one fails to keep open to this lurking shadow, it is usually at one's own cost. For the pain is likely to intrude when least expected, and least welcome. It means that each encounter is an entry into grief ministry; one is forced to look into the eyes of death, and, ultimately, at one's mortality. With each encounter, I find myself looking more closely into the meaning of my own life. As I look into the anguished face of one who is dying, I see the face of Christ, and I gain the strength to enter yet another room and life. I have learned that when I allow these patients to share their pain and fears, and if I am willing honestly to walk with them, I discover not just a need to be met, but I discover myself.

Bobby was the first person with AIDS to whom I ministered. Bobby, a hemophilia patient, was ten years old when I met him. His opportunistic infection was chicken pox, from which he had suffered for two years. The day I met him, Bobby had been admitted for investigation to discover whether the virus was progressing. I was called following a spinal tap, because he did not appear to be doing well. As I entered his room, his large, brown eyes caught my attention. The room had been kept rather dark, due to the procedure. His parents stood at Bobby's bedside. I introduced myself and immediately Bobby sat upright and demanded to know "Why does God choose me? 1 don't want to be chosen!" The images still crowd back: the subdued light; Bobby, so ill, sitting up in bed; and my picturing Christ lying there, asking Why have you forsaken me?

How do I write dispassionately, from this distance, that I was "moved"? Or describe how I took Bobby's hurting face in my hands and said: "1 don't know why this is happening to you, but I want you to know that no one is going to leave you alone. Your family, your nurses and doctors, myself, and God, will be with you all the way." I did not know, sitting there, how helpful or comforting my words were, though I remember he sank back on his pillow and thanked me. Bobby died seven months later. Visits to him were never dull. He had an energy and a will to live that kept us on our toes. He asked me to sing Jesus Loves Me, This I Know every time I visited him, and every visit I made became the high point of my day.

As death grew closer, Bobby was sedated with morphine. During a scheduled night on-call, I entered his room, sat on his bed, and sang the song he loved so dearly. I told him I would be in the hospital all night, and that if it was his time to go, I would be there, and he need not he afraid; that all of the staff he loved were there, too. "Don't he afraid, dear child." A stat call took me away for an hour. Then a call from Pediatrics: "Betsy, please come back. Bobby just died."

My God, he did it. I paused to pray for strength, and then, as I entered his room, the tears began. I thought: "Bobby orchestrated this whole thing. He had everyone around him whom he needed and it was okay to die." I shall not forget Bobby, nor my thought, then, that this disease had just taken a precious child into its ugly grip.

And that is how it seems to happen: moments of mixed feelings; of peace, of sadness, of rage. From time to time, I stop to realize that these were reflections I had experienced on other occasions, with other patients, before AIDS. Only now, it is always happening. The caring person must pause to take stock more often, I think, than I had been accustomed to do, before AIDS.

Dan was older, just twenty eight years. I had trained as a volunteer for Omega House, a three-bed hospice facility, and was quickly reminded that any pastoral relationship may also become a learning experience. Dan was wasted, and in much pain. One evening, I sat on a couch rubbing the muscles in his legs, the discomfort of this activity being preferable to the night cramps that otherwise broke his sleep. He asked suddenly:

Dan:

Betsy, would you give me enough pain medicine tonight to kill me? (I had never been asked that before, and was stunned. Surely he had suffered enough. But I responded instantly):

Chaplain:

No, Dan. I won't.

Dan:

I didn't think so. They won't even give me a razor to shave myself. I guess they know I'll do something to myself. (There was a long silence. I was still trying to come to terms with my own thoughts, and how I was handling the situation. Dan broke the silence):

Dan:

You know, I have made my amends with God. and I feel that He has forgiven me. I’m not afraid of dying anymore. I just don't understand why God hasn't taken me. Haven't I suffered enough? Why am 1 still here?

Chaplain:

(I responded with words I had not thought out. Very slowly I said): Maybe the reason you're still here is that you still have something to teach us.

Dan:

(He looked at me questioningly). Teach you?

Chaplain:

Yes, I, for one, would not have learned the things you have taught me these last few days, if you had done yourself in the other night. You've taught me what it means to have AIDS: about planning your own funeral; about the pain of having your family reject you because of this disease. I thank you for teaching me so many things, Dan.

Dan:

(He looked at me. steadily): Oh?

He grew quiet, garbled something I could not understand, and motioned that he wanted to sleep. I recalled that he had had periods of mild dementia, and it seemed that he had drifted off. I wondered if he had made any sense of what I had said. I carried him to his room, and sat with him until he fell asleep.

The following day I arrived home from work, turned on the television set for the news, and dropped onto the couch. The interviewer had apparently done an intro about AIDS in Houston as the camera entered Dan's room and focussed on his face. I caught only a few words of the interview with Dan; it was something along the lines of: "How do you keep going each day?" Dan looked directly into the camera: "I realize that I still have something to teach people. That keeps me going."

I sat there with tears in my eyes. My God, he heard it!

Two days later, Dan died peacefully.

Keeping Control in the Patient's Hands

It is often claimed that people who enter the helping professions do so, at least in part, because they have strong nurturing needs that are expressed in their nurturance of others: patients, the helpless, and so on. I am aware at times that such drives shape my acts of ministry. It is tempting, for example, to do for others what they can manage for themselves. This tendency is more difficult to restrain when the client or patient is physically weak or ill, and it certainly must be faced directly when ministering to end-stage AIDS patients.

First, reinforcement of patients' abilities and efforts enhances their dignity and self-esteem. Their sense of achievement when minor tasks are completed can be the occasion for celebration, for which there are too often few other opportunities. Most of the patients with whom I have shared ministry have prized their independence, and, especially, their continued control over their decisions and lives.

This factor is especially evident in patients' efforts to learn all they can about available chemotherapies and to monitor dosages, side effects, and so forth. It is even more apparent in the effort that most patients make to understand and manage fully their entire medical care, as an act of cooperation with their physicians. In today's complex medical world, that is an act requiring great commitment on the part of patients, understanding from doctors, and one deserving of the support of pastoral caregivers.

The increasing technological nature of medicine and treatment modalities has opened the doors to growing perils in medical care. The dehumanization of much of medical care, the tendency of medical training to focus more on methods of treatment and less on the human needs of patients, and now, the critical shortage of registered nurses, are contributing to the need for patient advocates. This is not a new role for chaplains or parish pastors, but it is becoming a more important aspect of pastoral care in medical settings. Because so many people are novices in the medical world, they too easily abandon control over their own bodies and futures to the "experts," who are only too ready to assume a parental function. Many patients are afraid to challenge a physician, and to take charge of their own care. If they do so, patients are apt to be treated in a cursory manner, and AIDS patients in particular are still likely to be stigmatized in ways that violate human personhood.

People with AIDS have been forced to become better educated concerning the nature of medical care available to them, and to learn how to manage the hospital systems on which they are dependent. It is important to remember that most physicians did not learn about AIDS in medical school: patients and physicians are learning about AIDS together! Yet people living with AIDS may still need advocates within health care systems to whom they can turn with confidence for reassurance and for guidance in decoding those very systems. Pastoral caregivers, because of the prophetic tasks which characterize their calling, ought to be aware of these patient needs, needs which in my experience are more intense for people with AIDS than for other patient populations. Reinforcing a patient's efforts to maintain control in these areas may be one of the chaplain's most important ministries to people with AIDS.

The need and worth to the individual of exercising control may extend into all areas of daily living. Two conversations from my pilgrimage with Paul spring to mind. Paul was the director of the pediatric cardiology unit to which I was assigned. He called me to his office one day following a first bout of pneumocystis carinii pneumonia. We had never talked about AIDS. He closed the door and without a moment's hesitation, asked:

"Do you know what is wrong with me?"

(If he was going to be that direct, I had better be direct also): "You have AIDS, don't you."

"Yes, I do." (He looked surprised). "But I am feeling much better now. And I feel I am going to beat this." (I listened, and he went on): "I am a doctor, and I know there is no cure for this. I am going to die. But I also feel they will find a cure in three or four years, and I think I can stay alive long enough for them to find one."

"If anybody can, you will be the one," I replied

We talked together about heaven and hell; will there be enough things to do in heaven? How would he tell his mother and brother next week? Being gay and having AIDS, he believed he would die either an abomination or a martyr. Dying did not scare him; it was being dead that he was worried about. What's wrong with incarnation; what would it be like to come back as a shrimp?

Walking with Paul from diagnosis through his death was a journey I shall not forget. He was a brilliant man who took on the rigors of his specialty, pediatric cardiology, serving as a faculty member for a prestigious medical school. One of his colleagues spoke of his friend at Paul's memorial service:

I noticed that Paul changed following his diagnosis. He was known to be arrogant at times, but we would excuse that because he was a great cardiologist. But one day Paul said to me: "Great cardiologist! So what! There's something missing about Paul Gordon that isn't complete. It's not whole." Paul set about the job of finding what that something was and figuring out what to do about it. The something for which he was looking was his integrity as a human being. Life is not a matter of what you do, but it is the kind of person you are. Paul spent his last twenty months thinking, talking about the meaning of his life, and praying about it. Ultimately he would say "This is who I am, this is what I am, this is what I care about, these arc the people I care about." During his last few weeks, he rejected the arrogance others had noticed, found himself as a whole person, and in the process, found his dignity. Nothing else mattered; not cake on his face, nor his inability to sing any more; he could laugh at himself. He accomplished in two years what many of us have difficulty achieving in seventy years. He took control, and hc did it with courage and style.

Living and Dying with AIDS

As indicated above, people with AIDS become preoccupied with dying and death. In my experience, this occurs with greater intensity and frequency than I have observed in any other patient population. The unexpected aspects of this preoccupation are the lack of morbidity with which dying and death are explored by patients, the ease I have experienced in raising these issues if patients do not, and patients' comfort when I do so.

One day Paul talked with me about plans for his funeral:

Paul

Betsy, I want you to know that I want to buried in Michigan, which means my funeral will be there, too. (I remember asking "Why" because his family had not seemed very supportive, and the people who were caring for him lived in Houston).

Chaplain

But Paul, what about those of us who live here who will want and need to say goodbye to you?

Paul

If you wanted, you could have a memorial service in the chapel here at the hospital.

Chaplain

Would you like me to arrange that?

Paul

That would be fine with me.

Chaplain

Good, because you know we will have a service regardless! (Paul looked up and smiled There was a pause in the conversation as he sat in his chair, looking out the window of his office. I sat quietly across from him. And then he asked):

Paul

I've been thinking about something. When I die, will I be able to see or know how those I know and love respond to my death? Will I be able to go to my funeral or memorial service? I would like to.

Chaplain

I, for one, will expect you to be there. (Suddenly, I lost my composure, and the tears fell)

Paul

I don't want you to cry.

Chaplain

I can't help it. The tears come sometimes when I least expect them. God, Paul, you're really going to die.

Paul

I know, but when I sec people crying about it, it makes me a little scared.

One way to confront reality is to look it directly in the face. This occurred when we made plans to visit Paul's family for Easter. He said he wanted me to see where he had grown up. And he wanted to select a cemetery lot. I discovered that even when I felt I had been dealing with the reality of the disease, reality often took another form. I could face the fact that Paul was dying, as we sat and talked about it. But it was upon arriving at the cemetery in which he wanted to be buried that everything came crashing in on me. We were accomplishing one of the tasks for which he made the trip, but I was not ready. As we stopped beside that small, quiet, snow-laden cemetery, the sensation was a physical one—Paul was going to die, and die soon. I thought I was ready for that. But was I?

The rest of the day was spent driving through Paul's childhood. I recognized that it was his need to draw me closer into who he was, as well as to gain some closure to his short thirty eight years. By the end of the day, he was less and less interested in looking at cemeteries. He was feeling weak, and I found myself more concerned with the "now," rather than with the future. Someone injected the idea that he might wish to be buried next to his father, to which he replied "But that's an hour away from here. And how often have we taken time to visit that grave? I guess by then I won't care, so do whatever you want. I'm too tired to think about it anymore." Three days later we returned to Houston, and instantly Paul became more animated. "This is home, and I’m glad to be back."

Ted was another person with whom the questiom of dying, death, and funeral arose spontaneously. I had met him on his admission to the hospital. He was thirty two, thin and weak, but sparkling with wit, and obviously one who enjoyed being with people. He thanked me for coming by his room. I learned that his strong faith had been with him since childhood. He received strong support from his family and his pastor, who brought Holy Communion regularly.

The day before I left to celebrate Christmas, Ted was feeling down, and agitated. He told me he wanted so much to die; that he felt good about where he was going, but that he was frightened about the process. I encouraged him to think about his funeral: what it would be like, who would lead it, and who would be there. He asked if he could plan it, and I encouraged him to do so. Two weeks later, upon another admission, he called me to his room. He looked at rest, peaceful that he had accomplished a task which had clearly given him a new lease on life. He had taken the only area of control left to him, sharing with me that during the Christmas holidays he had contacted each friend he wanted to participate in his funeral, and assigned to each of them a specific part of the service. He had been surprised at their tears, he said, but all had accepted his invitation. He described how he tried to reassure them: "It's going to be a happy occasion. I won't be suffering any more. And I feel I will be there in some way." Ted told me how he had given his pastor an order of worship, and the scriptures he wished to be included: "I typed it up and sent it to him."

During Ted's funeral service, his pastor described to the congregation how Ted had planned his service, and how unusual that was, yet how important to Ted and now to the congregation, for it spoke to them of Ted's healing. Ted’s pastor had assured Ted that his request would be carried out just as he wished. I had the sense that he was present, smiling.

Facing the Implications with the Patient

Discussion of estate planning and creating legal or medical power of attorney has become a customary practice with people living and dying with AIDS, in a manner very different from the needs of people facing other catastrophic medical crises, and different from the parameters within which my ministry to them has been shaped. As I reflect on this phenomenon, it still feels out of place when I think of ministering to cancer patients or other terminally ill patients I have known, yet the most natural and appropriate step with people with AIDS. Why is the subject taboo with some patient populations but an open door with others? Have we created artificial barriers as we have become part of the medical establishment? Are we inhibited by a fear that other staff members may misunderstand our motives because our roles have always remained ambiguous? Or is something different happening as we minister to people living and dying with AIDS?

Herbert Anderson addressed this "problem" faced by chaplains in an address to participants at a conference on pastoral care in the out-patient setting at the M.D. Anderson Hospital in Houston in January, 1989:

Although chaplains have worked very hard to be regarded as full members of the health care team, we would not be there if our identity and values were not anchored outside the hospital and health care world. It is a paradox of pastoral ministry in the medical context that we belong precisely because we are outsiders. It is our "outsiderness" that gives us the perspective we need to be prophets (my emphasis).

Anderson claims that as chaplains we bring a different vision, and therefore what we see is different. It is because the value of the person transcends the values of health and because we know that finally we die because we are alive, not because we are sick, that we see beyond medical technology. I believe Anderson is correct, and one implication we are now forced to examine is that the changing shape of ministry to people with AIDS is laying bare our captivity to hospital administration policies. Or, perhaps, to be fair, ministry to people with AIDS is laying bare society's—and our—captivity to staying alive, to physical healing, to dodging death at all costs. If so, then perhaps ministry to this group of people facing new medical and life crises has much to teach us about ministry to people facing the crisis of dying. People with AIDS are teaching us about priorities, about the preciousness of time, of moments, of retaining significant areas of life over which one can maintain control. For they do not have the luxury of unbounded time to accomplish what they need to do! There is often an urgency about their needs, and impatience with others who are unable or unwilling to move at their pace, or cut through the incidentals to what is really important. That, for example, may include the need to address such matters as powers of attorney, and making a will.

It is as appropriate to initiate exploration of such specific issues as estate planning and creating legal or medical power of attorney as it is to do so concerning dying and death. Chaplains or lay or ordained pastors, as concerned but disinterested caregivers, may properly raise such matter as pastoral concerns as long as they play no part in the decision-making process. That is, the caregiver may not fill both roles, chaplain and power of attorney, since thc dual roles would introduce a conflictual element into the relationship with both patient and his or her family members. With this caveat, thc assistance that chaplains may offer in exploring these concerns, as proper pastoral issues, serves to enable and empower patients to take or keep control over critical life decisions.

Patients as Actors in Their Own Deaths

This assessment calls into question a long-held assumption that "everything which is done at the time of death is done for those who still live and feel." Edgar Jackson's words are not negated by our experience with people living with AIDS; they are based on a too-narrow perception of the process of dying and death. Death is at stake in dying, and people dying from diseases resulting from HIV infection are intensely aware of their deaths. For the most part, they are determined to be actors in their deaths, and so are helped to die. They certainly are comfortable with Jackson's elaboration of his funerary comments. For he continues that, as John Donne pointed out, "the funeral is for everyone, for it is a simultaneous process by which the reality of death and the mortal nature of man are honestly faced, and whereby the viability of the continuing community is affirmed. Although there is death, it never overcomes life." Where people with AIDS seem to take issue is with his ensuing implication that the significance of the rituals of death is for those who desperately struggle (following the death of a loved one) to find some meaning in the process by which death overcomes life. That is, "the acts are carried out, the ceremonials are performed, to provide the climate for acting out and working through the deep feelings that exist in the living." We now know that such images may apply to all in the family circle involved in imminent death, and usually, in the case of death due to HIV disease, including the dying person, who not only docs not want to be left out of these events, but may need to orchestrate them! Moreover, in all the instances in which I have been involved, the exploration of such issues has been a healthy and life-giving process. For example, one of the results of such explorations—if family members are able to overcome their anxiety about joining with their son or daughter or sibling in such conversations—has been the positive contribution they have made toward achieving mutual understanding and reconciliation, where that has been missing from the family constellation .

The Caregiver's Own Mortality

Pastoral caregivers scarcely need any reminder that they must face their own feelings concerning dying and death if they are to minister effectively to others making this passage. The literature has emphasized this matter, and every CPE student has been urged in supervision to examine his or her mortality as a prerequisite to dealing with that concern with others. Nevertheless, the reality that day-by-day pastoral visits may become routine, or that denial or other factors may dull the caregiver's self-perceptions, suggests the need to remain self-conscious in dealing with one's own attitude to death.

This concern surfaced for me in two events. When Paul was to enter the hospital for what became the last time, I knew he had few reserves on which to call. To him, being in the hospital meant accepting defeat; he did not want to go, and verbalized that he wanted to die at home. I promised him I would do my best to honor his wishes, but discovery of the onset of cytomegalovirus meant that the only treatment for this complication required a fourteen-day hospitalization. He was angry, and those closest to him received the brunt of that anger as they struggled to deal with the closeness of Paul's dying and death. He could breathe only with difficulty as he walked into the hospital—but he insisted on walking. He was going to enter the hospital under his own power one last time, leaning on a walking cane, and refusing assistance, he proudly but slowly made his way across the parking lot. Paul did not return home. After two weeks, tests indicated a brain tumor. Three weeks later, Paul died.

In walking through these days and nights with patients, I am reminded of the need constantly to re-evaluate my commitment to patients, examining the relationship between my role as friend and that of pastoral caregiver. I am aware, too, of what others have shared with me from their ministries with people with AIDS: namely, that once one has committed oneself to this ministry, it is difficult to pull away.

It was this awareness, as I ministered to Paul, that caused me to look for pastoral care for myself. I needed someone who was aware of my needs and to whom I could go as a pastor. I was helped to see that I entered into patients' lives as they faced death, and to an extent greater in some cases than others, but never absent, became a combatant, pushing death away as best 1 could, yet knowing that death, despite St. Paul, was not the enemy. Walling others off, hiding from pain, protecting others in a parental sort of way—these become the phantom spirits, the principalities and powers against which the caregiver must struggle.

And then there is the matter of how one resolves issues when the lines between pastor and friend become blurred;

During the final weeks of my ministry with Paul, a friend called to say that she had been talking with him, and that he was scared:

Chaplain

Why couldn't he tell me that?

Friend

I don't know, . . . but I encourage you to visit him, tears and all, and tell him your feelings. He needs to know them. (Our conversation was interrupted by a call from Paul):

Paul

I just wanted to tell you that I think I am getting pretty sick again. I have a fever .

Chaplain

Do you want me to come over? (Why else would he be calling?)

Paul

It's not necessary. (In that moment, I snapped to what I needed):

Chaplain

Paul, I want to come over.

Paul

Then please come. (When he saw I had been crying, he told me not to.)

Chaplain

Don't take that away from me. I won't cry all the time, but a hurts.

Paul

Well, I will admit to you that I have been protecting you from thoughts I’ve been having about dying.

Chaplain

Please don't protect me. I can handle this. What I can't handle is your silence. I want to tell you something I have been discovering I am having some difficulty separating my two roles: friend and chaplain. I was trained to listen to another's pain, but not he consumed by it. But it is difficult to manage that all the time, and not cross over the threshold.

Paul

Before you say any more, no matter what you say, I still feel you are my chaplain. You offer me things other people cannot. We talk about spiritual things; you go to church with me; and you've remained my friend. I don't know how I got to be so lucky as to have you with me, but I thank you.

Chaplain

You're welcome!

Later that evening, I called my own pastor, and told her about the conversation In retrospect, the role confusion was important, because I discovered that I did not have to be one or the other. Whatever was necessary for the moment was fine. I had to trust the process, to believe that God was deeply seeded in the relationship. I am invited into the lives of other people as a privilege, and it is happening in different ways with people living with AIDS than I have been accustomed to expect with other patient populations. But I learned that it may be foolhardy to venture into such sensitive and personal areas unless the chaplain not only is aware of the risks, but actively seeks pastoral oversight for her or himself.

Ministry to the Extended Family Dying With AIDS

We are all living and dying with people living and dying with AIDS. If the most pessimistic projections hold, we will reach toward 400,000 cases within four years, and, ultimately, a total of one million cumulative cases well before the end of the 1990s. Not just a million people living and dying with AIDS, but a nation living and dying with AIDS, and more tragically a world living and dying with AIDS.

But, for the moment, our focus is on our immediate, personal ministries. Hospital chaplains are accustomed to ministering with extended families who accompany their respective member-patients through the trauma of illness and hospitalization. In a sense, depending upon the relationship of other family members to the identified patient, each member of the extended family "lives" the hospital experience with the patient, and "dies" a little with the patient, John Donne captured this thought when he wrote.

. . . any man's death
diminishes me, because I am involved in Mankind;
And therefore never send to know for whom the bill tolls,
It tolls for thee. (Meditation XVII).

Such lines may sound academic, even trite, until one shares with people the passage through sickness and death of a family member or intimate friend.

When suffering and death arc personalized in the pain and grief of individual people, pastoral ministers (chaplains, clergy, laypeople) stand on hallowed ground. Ministry to the extended family cannot be separated from ministry to the identified patient.

This is one more area in which I have experienced pastoral care to people living with AIDS in ways unlike those characteristic of other patient populations. While intense and prolonged relationships with families have occurred in other types of situations, that is not normative, as I find it to be with people living with AIDS. My observation is based not only on my own experience, and on conversations with other chaplains, but includes the experiences reported by lay participants from the nearly thirty congregational care teams coordinated by the Foundation for Interfaith Research and Ministry in Houston. It is an experience shared by hospice staff and volunteers, but which is now entering the field of general pastoral ministry.

Ministry to families living with AIDS may include a ministry of reconciliation with family members and a son or daughter whose life style (homosexual or chemical substance abuse) has led to alienation. It may extend to paving the way for an accepting relationship between a family and a son's lover. That certainly may involve reconciliation with the son's request that his lover be accepted fully into funeral arrangements. It may involve, also, assisting the next of kin to understand and accept patients' decisions to invest legal and/or medical power of attorney in people other than family members, as well as decisions regarding estate planning and the planning of funerals. Any one of these items may be the focus for misunderstanding, anger, or grief, and each may call upon the pastoral carer's gifts and skills in ministry.

Personal Faith and the Ministry to Persons with Aids

My journey with this disease began on a cold November morning in 1986—the day I learned that a dear friend had been diagnosed with AIDS. From that moment I have felt God’s call to minister among those with HIV disease. Never has there been such a strong sense of call. Two days later, while training at Omega House, a hospice for AIDS patients, as I sat in the quietness of Christ Church cathedral, I again felt that call.

It was in the stillness of that sanctuary that I began to hear myself respond to that not-so-still small voice, to love and care for people with HIV disease whom society has discarded: "For when I was sick, you visited me; . . . and whenever you did this for one of the least important of these brothers and sisters of mine, you did it for me."

I am still appalled at the recollection of hateful comments from some members of the religious community that AIDS is an expression of God's wrath. People afflicted by HIV disease need the experience of God's acceptance as that is mediated through human hands and hearts. Over and over, I thought of what Christ would he doing. I believe he would be walking the streets and alleys where people with AIDS are to be found, looking over his shoulder to sec who is following him in a ministry of acceptance, compassionate and unconditional.